Egull1's Journal, 25 October 2020

This "before" pic is one of my favorites. I cannot begin to express how much I adore that sweet girl on the left. If you want to know who inspires me, it's her. And, every time I see this pic - I want to reach across time and give her the biggest hug and let her know what a phenomenal being she is and I hope I am doing her justice.

Interestingly enough, out of these 2 gals - one of them is on some pretty heavy chemo potent "performance enhancing" steroids.

Can you tell me which one? LOL - it should be pretty obvious.

Though, I didn't have mine injected. Nope - they gave it straight to me in an IV for 5 straight days. It took a few hours to empty out the bag each day and then I was able to be free of that damn "coat rack" device and hit my mile quota around the oncology ward at the hospital.

I can still remember the attending Doc sitting in a chair just to the right of the girl in the left photo saying, "I cannot believe how well your system handled such a potent dose of steroids the first time around. It's amazing!"

All I noted at the time was that my blood sugars and blood pressure were elevated, but other than that - my body didn't seem to even register it. Nope, what I was focused on was the extremely high White Blood Cell Count, and when the 3 bands of Oglio dendrocite cells were found in my spinal fluid - I felt pretty certain, hands down we were dealing with MS.

Still the battery of tests is unbelievable. At times it felt like each day at the hospital required a daily planner and a personal assistant. An hour and a half in the MRI machine, another hour for a spinal tap, another couple hours where I wasn't allowed to move afterward so I didn't lose any spinal fluid, meeting with the Occupational therapist, meetings with the Physical therapist, and blood test after blood test, after blood test. It's friggin amazing I was able to fit in lunch, I was so busy!

It's a damn good thing I was on steroids, I would have been exhausted otherwise. LOL!!!

So, did yours truly take advantage of all the performance enhancing elixer?

Well, honestly I tried. Not while it was being administered of course. But, I did ask them if I could continue working out when I got home. And, they said "Absolutely, just don't over do it because you're still so numb you may not know when your muscles are beginning to fatigue"

I mean there was so much energy and I wasn't able to sleep all that well. On top of it they put me on a steroid taper when I got home. I felt like a "roid queen" lemme tell ya.

What else was I going to do with that much roid in my system, but workout?! However, to this day I have no idea whether or not it actually enhanced my performance. And, really as annoyed as I was about having to be on that many steroids, I now understand they were desperately trying to get the inflammation down in my spinal chord, reduce the damage the active lesion was causing...

and, in short save my ability to walk on these precious two legs.

I'm so glad I didn't know why they were fussing, hustling, and bustling around me all day with that look in there eye whispering under hushed breath, "I think...I think maybe she'll be okay."

I don't even know where my measure of calm during all that was coming from.

What I do know is that sweet, lovely girl on the left parted from the hospital with a walker, discovered a precious light within herself, and one itty bitty step at a time - forged herself into the girl on the right. So, now you know why I'm so in love with that "roid queen" on the left there.

Do I take steroids now?

The simple answer is no.

After the taper was done in 2017, I thankfully have not had to do them again. But, for the record the 5 day "chemo-potent" dose of steroids provided at the hospital intravenously is standard protocol for MS flare-ups. Nowadays, we don't even have to stay in the hospital to get them, we can do it outpatient style and empty our "roid bags" when it's convenient. The only reason they admitted me is because they didn't know if it was MS or another rare demyelinating disease known as transverse myelitus. Not to mention, when the legs go numb - it's a sign direct damage to the spinal cord is happening and time is of the essence before numbness turns into complete paralyzation.

Another thing to note in some MS clinics, taking this kind of dose can be optional. Just because an MS flare up happens, does not always mean damage to the central nervous system will occur. It depends on the size of the lesion, where it's located, and how severe the symptoms are. Some MS'ers choose not to take the steroids during flare-ups because, as the good doc noted - that kind of potent dose takes a huge toll on the kidneys. So, it's not the kind of performance enhancing elixer one wants to put their body through if they don't have to. For, whatever reason I lucked out. But, I'm so thankful I've never had to take them again and petition the universe I never will.

Anyhow, on another note - as stated last week I'm hanging steady with my current cals. No increases this week. Next Tuesday is my b-day and also a surplus day. So, weigh-ins may be a little wonky until things level out around Nov. 8. One of the goals I'm really implementing is paying attention to body measurements right now. Waist and hips specifically. I'm really aiming for lean gains here, so as weight increases - what becomes more essential than scale weight is measurement.

I know there has been an increase in muscle mass. I can feel it, but at 18% body fat, I can see it readily now. We're not talking pounds of muscle by any stretch, but it's happening. So, it will be essential to use body measurements to keep track and ensure that increased fuel is going toward muscle growth vs. body fat over the next year.

Other than that dear friends, we just keep on keepin' on :-)

Have an amazing, blissful week everyone! I will catch you next weekend.
111.4 lb Lost so far: 98.6 lb.    Still to go: 0 lb.    Diet followed reasonably well.
steady weight

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Comments 
I love to read your posts. You are a great writer and a great human. Your strategies and determination are jaw dropping. I’m always impressed with your guts and glory egull! ❤️❤️ 
25 Oct 20 by member: wifey9707
Awww, thank you wifey {{Big Hugs}}. I am truly thankful you get something positive out of what I put out there and appreciate the support and encouragement. I genuinely give all the credit to this body that keeps on tickin' even with all I've put it through and that great big divine infinite universe above, and of course to that willfully determined gal on the left. To be sure, without her I would not be here to pursue my bliss. 
25 Oct 20 by member: Egull1
We were both going through some scary stuff at the same time. You have come out on top and I will always remember the support we were to each other. I feel I have come out on top too, as I am able to have a normal life for an elderly person with autoimmune for over 40 years. Thank you for being here and staying with us all! 
25 Oct 20 by member: Horseshu1
thanks for sharing your story with us. Quite a experience. you are truly an awesome example. 
25 Oct 20 by member: carol655
I had no idea! What an inspiration you are! 💜💜💪💪💪 
25 Oct 20 by member: Diana 1234
Simply.Freaking.Amazing🤙 
25 Oct 20 by member: acomandr
Always inspiring and amazing! ❤️ 
25 Oct 20 by member: davidsprincess
The best!  
25 Oct 20 by member: HCB
Awesome stuff, Egull! You're so smart about the whole process. That mind has given you an edge that is very apparent. Great transformation. You're an inspirational part of the community and it's great to have you here! 
25 Oct 20 by member: -Diablo
Your journey should inspire anyone. What you have overcome and your daily work to continue progressing leaves no one with an excuse to not keep struggling to reach their goals. You are amazing!  
25 Oct 20 by member: melissatwa
You are amazing and a true inspiration. I love reading your posts, they are so honest and beautifully written. You have overcome so much and you just radiate health and strength. Much respect! 💖 
25 Oct 20 by member: newnamewhodis
well, you are truly inspiring! love your attitude and awareness.  
26 Oct 20 by member: KarlaD0081
I have RRMS and am having a flare. The first in many years. Yet another MRI next week to determine course of tx. New Dr, so we'll see if he's the aggressive sort. At least diet and exercise is something I have control over. Flares...nope. 
26 Oct 20 by member: RapidRabbit
Thank you all for such beautiful comments!!! What wonderful thing to read on a Monday morning. @Rapid Rabbit - I'm petitioning the universe for a good outcome. Knowing how to treat MS flare-ups is never easy task and just as much based on the patient's comfort level as it is the Doc's perspective on what is being impacted. You're definitely correct with regards to diet & exercise. Many MS specialist's confirm - consistent diet & exercise can be the difference between a wheelchair and a cane for an MS'er. Keep pedaling :-) Thank you, Karla - I'm learning most approaches to health & wellbeing are 100% mindset. Out of any challenge I may incur physically, what's going on in my head, hands down is always the biggest battle I encounter. Once I get my head in the game, it's amazing how everything else falls into place :-) And, what a genuinely beautiful thing to comment newname. Thank you. It really is important to me to be the kind of energy I want to see in the world. And, kindness, love, health, and strength are definitely those things I work hard to cultivate to the best of my ability. And, thank you very much Melissa. There have been a few lessons I've had to learn since those days in the hospital - but, one rings strong and clear in this girl's heart. Life will indeed throw everything, but the kitchen sink...and, then just when one thinks it's all good - it will throw the kitchen sink as well - LOL! Once I learned to just accept this and throw out expectations about how I thought everything was "supposed" to go, it opened up a space in me to simply accept what is, explore the workaround (and, there is always a workaround), and do what we're all capable of doing, which is adapt. Besides, I always end up discovering most of what I "thought" was a curse, ends up bringing a whole bunch of blessings I never bargained for :-) And, thank you so much Diablo and DP. In a very real way, this community is a huge reason why this girl went from trying to take a few holiday pounds off in 2017 to genuinely committing to lifestyle changes that have completely transformed and enhanced my overall health and well being. I cannot begin to say how thankful I am that each of you here has contributed in some way, shape, or form to improving this girl's quality of life {{BIG HUGS}}. And, Horseshu - I very fondly recall those days as well. I think there are only a handful left from that time and I posted here almost everyday I was in the hospital. You and a few other autoimmune veterans in addition to many members of the FS community were so supportive and encouraging while I was adjusting to this whole new reality. I can honestly say, I think the experience might have been more traumatic without that valuable input and support. I'm so glad you're doing well and it warms my heart that you still check in from time to time. Definitely with you in spirit, always :-)  
26 Oct 20 by member: Egull1
You look GREAT 
26 Oct 20 by member: kb1277
amazing journey of self love. your amazing.  
26 Oct 20 by member: one.point.O
Wow you are different person and very great job to you!!! 
26 Oct 20 by member: caraken
Blessings to you and yours ☀️🌻💛🙏 
26 Oct 20 by member: CharlieLovesChaplin
Amazing transformation under dire circumstances Egull 🦅👍👍 
26 Oct 20 by member: sk.17
thank you for this lovely post 
26 Oct 20 by member: Joelmel

     
 

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